Brave Little Hearts Namibia

Brave Little Hearts Namibia (BLH Namibia),  a member of the Brave Little Hearts Africa, was founded in 2018 by Martha Shiimi Naambo, a TOF survivor and advocate, with the help of cardiologist Dr. Fenni Shidhika and her team at Windhoek Cardiac Clinic.

The organization provides an opportunity for families and CHD patients to support each other, share their experiences, give hope, provide educational information, and raise awareness of congenital heart disease.

Global ARCH speaks to Martha Shiimi Naambo:

1. What would your members say is their favourite thing about being a part of Brave Little Hearts Namibia?

Their favorite things about being part of the BLH Namibia include networking and connecting with other heart parents and patients, as they provide each other with incredible ways on how to cope in a positive way with exceptional life circumstances.

This was one of my inspirations in creating this platform, as this group helps parents and patients get all kinds of support, including information, emotional and lifelong care so they can better face the stress of caring for a CHD child or of living with a chronic heart illness.

Martha and colleagues celebrating World Heart Day in Tsumeb in 2019

2. What are some of the biggest challenges you face as an organization?

Adequate access to healthcare. We are blessed to have one of the best doctors and healthcare providers but we have limited facilities and resources. Our highly specialized cardiac clinic is centralized in Windhoek but most patients and families cannot afford to live in the city. Therefore they have to take time away from work and school to go for their appointments, which can disrupt their routines.

Most of our adult CHD patients struggles with stigmatization – mostly shaming and blaming when society thinks hearts patients do not take good care of their health even though most of these health challenges can’t be prevented. And I believe with more awareness and education people can show more empathy and supports towards heart patients.

Above and below: Celebrating CHD Awareness Week, it was their first event which was hosted with the Windhoek Cardiac Clinic team

3. What are some of the highlights of working with congenital heart disease families?

Hosting our first ever CHD awareness week earlier this year was a big success. We created an opportunity for both our CHD families and our healthcare providers to come together to share information and raise awareness. Our goal is for more patients to share their stories and give hope to others.

Another highlight is having the opportunity to visit patients in the hospital and giving them hope.

4. How can Global ARCH help you the most?

Firstly education and training. I would love to learn more about CHD advocacy and information that will help me better our CHD community here in Namibia. I also would like to be kept up to date with new information that I will be able to share with my members.

Currently we only have access to our Windhoek based patients, and I would love in the future for all our patients all around the country to have direct access to the information, especially those in remote areas.

RHD Support Group – Uganda Heart Institute

Please tell us about the RHD Support Group-Uganda Heart Institute
It was formed in 2015 by a group of patients diagnosed with RHD, and supported by doctors and nurses at Uganda Heart Institute (UHI) Mulago. It is composed of patients both that have undergone surgery and those that have not yet acquired it.

What is the mission of the organization?
The group was mainly formed to support people living with RHD and to fight RHD in Uganda through awareness programs, bringing hope to patients, caregivers, and the community.

Future goals are to:
Create other patient support groups in the satellite clinics established by UHI in Uganda in Gulu, Lira, Mbarara, and Entebbe

Create a strong platform for the existing RHD patients to provide peer-to-peer social and emotional support, and guidance for a healthy lifestyle

Raise a collective voice together with UHI Mulago to fight against RHD

What are some of the challenges you face?
Challenges include a lack of financial support to reach out to all our targeted community and to carry out our activities consistently. This has been addressed by soliciting funds from friends and support group members’ small contributions. Grant proposals have also been written to both local and international organisations for support, though this has not yet been a success.

Also, the RHD population is sparse and the use of local herbs is common, so we are addressing this by linking them to our community outreach to create more awareness about the disease, however so far this has only been done on a small scale.

What are you most proud of?
We are very proud about the group because it has given us extensive health knowledge so that we are familiar with RHD. The awareness part makes us proud. Letting children know about RHD is important. Some of us didn’t get the opportunity to listen to those messages while in school. and maybe life would be different if we had known.